Invest in ME Research is an independent UK charity campaigning for and facilitating biomedical research into myalgic encephalomyelitis (ME).
More details of the charity are here.
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Welcome to our July newsletter.
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Clinical trial at Quadram
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At the IIMEC14 international conference in London in May Professor Simon Carding from Quadram Institute announced the intention to conduct a clinical trial for ME in Norwich Research Park.
The project - called RESTORE-ME - is to undertake a study to determine the effectiveness and safety of faecal microbiome transplantation as a treatment for ME.
Invest in ME Research has been in discussions about this for some while and, with the support of the Hendrie Foundation's pledge, has committed to funding half of the costs of this trial.
This is a major boost for research into ME and we invite support from all to help us deliver this project which will enhance research and augment the foundations of the Centre of Excellence for ME
A fundraising page has been set up to support our efforts to find the remaining amount - click here
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Our friends at the Irish ME Trust have already contributed to the trial - for which we give our grateful thanks.
Not only fundraising is needed but also awareness of the research being undertaken at the Centre and the possibilities with this trial, and others that could follow.
Read more
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From Norway to Norwich
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Quadram Institute is collaborating with the ME/CFS clinical trial researchers at Tromsø in Norway.
The Tromsø team have already embarked on an FMT clinical trial with the Comeback study (details here)
Invest in ME Research is now funding a visit by Dr Peter Johnson and Dr Linn Skevling from Harland to Norwich in late summer. This will allow the teams to develop further their collaboration in order to get the best results for people with ME
More details coming soon.
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IIMEC14 Conference Presentations
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Editing and production of the conference videos has now been completed.
The IIMEC14 Pre-conference dinner presentation by Dr Ian Gibson is available here - http://www.investinme.org/IIMER-Newslet-190701-iimec14.shtml
Dr Gibson brings his unique view to ME in his redoubtable style.
Read more
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We are also pleased to release The Anne Örtegren Memorial Lecture.
This year the Anne Örtegren Memorial Lecture was given by Professor Stuart Bevan, Professor of Pharmacology at the Wolfson Centre for Age Related Diseases, Kings College London.
Pain is a serious consequence of ME in many cases and Professor Bevan provides a special insight into this.
Read more
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The remaining presentations from the conference will be release during the coming period.
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We would like to thank our great supporters for their efforts in two recent campaigns.
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Firstly, in the recent Ecclesiastical campaign, we are pleased to announce that Invest in ME Research was one of the winners of £1000.
The award will go towards funding of the GP fellowship scheme that is being jointly funded with Quadram Institute and organised in collaboration with Great Yarmouth and Waveney CCG.
Read more
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Thanks to our supporters the charity also won an award from claims.co.uk.
Invest in ME Research was nominated to win a £3,000 boost as part of Claims.co.uk's goal to help others.
Read more
To all who supported the charity in these awards we would like to express our great thanks and appreciation. The funds will be put toward the RESTORE-ME clinical trial.
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European ME Clinicians Council
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The inaugural European ME Clinicians Council (EMECC) was held in London and it turned out to be a great success.
The meeting was for experienced clinicians to share their knowledge on diagnostic and treatment methods and produce documentary aids for the research community focused on clinician guided treatment trials, identification of possible illness subsets, and observations of illness presentation.
The charity will continue funding this important initiative and the next meeting of EMECC is being planned now.
A web site for EMECC has also been created and will be further developed over the next months - www.emecc.org
Read more
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Connecting European Clinical and Research Activities
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A new meeting of the European ME Research Group is being planned with new members coming from up to eight countries.
The charity wishes to coordinate research with clinical knowledge so the EMERG and EMECC groups will work together for the benefit of patients in Europe.
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Australian submission to NHMRC Review
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Earlier in the year IiMER were asked to, and did submit comments for the Australian review of ME by the National Health and Medical Research Council (NHMRC), the Australian body for health and medical research.
Based on the pro-forma provided the charity gave its comments to a draft document from NHMRC.
Our comments were available - click here
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Question to UK Chief Medical Officers
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Some news that we did not fully report before.
We received replies from the Chief Medical Officers of Northern Ireland, Scotland and Wales to our simple question in our Christmas Appeal -
("What message will you give for this Christmas/New Year to all people in UK who have Myalgic Encephalomyelitis, and to their carers and families and their friends, regarding the prospects for people with ME?").
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Notably the gaping absence in engagement comes the expected quarter - the office of the CMO of England. Ironical, as the reason given that the Chief Medical Officers of Northern Ireland, Scotland and Wales declined to attend our London 2017 CMO Summit meeting was because they take their direction from the English CMO.
Dame Sally Davis has been a notable absentee from the debate on how ME has been perceived and treated and researched.
She will vacate that office this year after 8 years in that role - though it is unlikely any ME patient or their family will notice her departure.
Whilst the usual sycophantic establishment applause for her tenure comes forth people with ME can look at eight years of neglect regarding ME, where the CMO of England had done absolutely nothing to help the situation.
Read more
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Royal Parks Half Marathon
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For 2019 we have twelve places in the Royal Parks Half Marathon. Two places are still vacant.
If you wish to run to raise awareness and funds for biomedical research for ME and to support the charity then please contact us.
Here is a link to this year's events page
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IiMER's First PhD Graduates
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Finally, congratulations to Dr Daniel Vipond who recently was awarded his PhD.
Daniel was the first PhD student funded by IiMER and the first crowdfunded ME researcher.
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Thanks to great efforts by supporters and the Let's Do It For ME team we managed to initiate research in Norwich Research Park
Daniel represented the charity at the recent Washington conference organised by the NIH.
He has also been presenting at the Thinking the Future conference and BRMEC9 Colloquium in London.
More details of the research project is available here.
More details of the crowdfunding is available here.
We wish Daniel the very best for the future
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